I guess some of my readers have wondered where I am lately. It's been awhile since I've really written in my blog, and alot has been happening.
For those who don't know the background on this; 12 years ago just about every system in my body went haywire and I almost died and was finally diagnosed with Sarcoidosis. I got on a cutting edge off-label protocol called The Marshall Protocol just in time, and was on it and feeling improvement for 2 years when Medicare Part D came along and once my drug coverage was transferred from Medicaid they would not cover the medications. The cost out of pocket was too much on my very small income, and I was unable to qualify for the few medication assistance programs that existed at the time, so I had to go off it.
I tried controlling it by taking it easy, eating a mostly macrobiotic diet and limiting light exposure and for awhile that kept things to a low roar, but gradually my pain level increased and more symptoms started returning. I tried to push it out of my mind. I really didn't want to believe I was having disease progression because I felt I hadn't had a chance yet to really succeed in life and was tired of all this. I just wanted to put it behind me and get on with and enjoy life.
Meanwhile sales had not been good in my Etsy shops and I thought if I could just build up my stamina maybe I could try to do some things to increase my income and hopefully give my business the shot in the arm it needed to really make it profitable.
My plan was to go to physical therapy (hopefully pool exercise and massage), reduce my pain level and then possibly take some part time work to pay off debt and reinvest more capitol in my business so that I could buy some tools like a rolling mill, kiln, and electroforming equipment, and maybe take some more specialty classes to add some new techniques to my arsenal. I've wanted to be able to make my budding vine bracelets in other metals for awhile so that a larger number of people can afford them, as I think that really is one of my signature pieces.
During physical therapy I had a near fainting spell, and began noticing for several weeks that my breathing was difficult and had some motor slowing that would last several hours at a time on and off.
My primary care doctor had suggested I have a Sleep Study too because I was also having sudden episodes of really strong sleepiness. I figured if it was narcolepsy then I could just take a pill for that and move on to my goals. I actually thought that test would be negative, so went into it just wanting to get it over with.
Well I went in and they hooked me up to an EEG and all these other sensors to monitor my breathing and heart rate, etc. I was attended to by a nurse named Gana who was very nice and that night there were just a few other patients, so it was pretty quiet. The TV just so happened to be tuned to a show called Prospectors and they were pulling big honking aquamarine crystals out of the ground. We talked a little bit about jewelry and gemstones before they started monitoring.
An infrared camera filmed from across the room my every movement as I slept (or tried to anyway).
I have sinus problems, so having something sticking up my nostril to sense my breathing was kind of difficult. I don't think I slept very well and kept waking up needing to drink ice water. Even then I thought the test would come out negative and that it was just my sinuses that were irritated and maybe all that stuff hooked up to me that was interrupting my sleep.
Little did I know it went alot deeper than that. About a week or two later I got a phone call from the sleep lab saying they wanted to do another sleep study. I asked why and the woman on the phone told me that they wanted to do a CPAP titration. Mind you I had not even seen the doctor for a full report yet and I was shocked. I told them this and said "Are you sure? I was having lots of sinus inflammation. Couldn't that be it?" A man got on the phone and said I had stopped breathing. Then I spoke with a nurse who confirmed that was correct.
I made the appointment thinking Oh God what a can of worms have I opened up now? I didn't know the half of it; not yet. I asked the nurse from the doctor's office to send me the full report.
When I went back to the sleep lab they hooked everything up to me except the nose sensors and then the same nurse I'd had the previous time came in to fit a mask on me. The first one was a nasal mask and when it was hooked up to the machine it shot air with such force up my nose I thought my eardrums would burst. It seemed to be hitting an obstruction somewhere in my sinuses. Then I tried another one that was similar and that didn't work either. Then I tried a full face mask. That wasn't as bad since the air was more indirect, but the straps were pushing my head down into my neck and increasing my pain after awhile, so I had to try one with just one strap around the back of my head. That shifted a bit but it was the lesser of several evils. I thought at first that maybe I could tolerate it, but then the minute I started falling asleep it would suck air out of my lungs rather than blowing wringing them out like one of those space bags you see advertised on TV. The air from inside my lungs smelled like some sort of awful athlete's foot fungus.
After a number of hours of this, and twisting and turning to get comfortable I had all I could take of that. The nurse, Gana came in around 5 AM and I told her I was having a problem. The look on her face said it all, although she wasn't allowed to tell me the details. She took off the horrible thing and all the wires and said she was so sorry, that it was hard to watch, and hoped the doctor would find something that would help me. I asked if this happened very often and she said it did to some but was not common.
The next night at home was rough and left me gasping for air numerous times. It was worse than it was in the sleep lab.
A few days later the report came in the mail and it was much worse than I thought. Apparently I had a raging case of central apnea (which differs from obstructive in that it's usually neurologically based if not caused by heart failure). The test did not detect any heart problems, so that left the brain stem etiology. My brain fails to send the signals to my lungs to breathe. I stopped breathing 30 times in each hour of sleep, and I was also breathing too shallowly at other times, resulting in oxygen desaturation. hey documented it while I was awake watching TV as well!. Various symptoms I'd had for years started to all make sense.
I thought back to some neuropsych testing I had at age 6 that suggested that I had some central nervous system dysfunction or damage that was something to do with the regulation of alertness, and thought back to various EEGs I'd had where they found slow waves where they shouldn't be. The headaches, the intense period of complex partial seizures I had for a few years around 1986, and one neurologist had told me something "wasn't hooked up quite right" in my brain. Nobody ever had an answer for these things. All they seemed to be able to do was document it while I struggled alone as best as I could to live a normal life.
An MRI was scheduled which yielded no further clues as to exactly where this is coming from.
Now I find myself at age 54 with a failing respiratory system and I still don't fully know why. Lots of circumstantial evidence is scattered around like shards of glass on the floor but no smoking gun. This elusive thing whatever it is comes and goes like a thief in the night, robbing me of my most basic functions switching them off and on at will. I have possibly lived with it all my life and in order to adapt to this state of being one can never trust tomorrow. It holds all the cards in its hand and I'm just its marionette. I've tried fighting it, ignoring it, reasoning with it, but in the end it has a mind of its own.
I have been unable to eat solid food now for over a week except for a few crackers or a little bread. Sometimes I have little appetite and other times I really miss good food, but when I try to eat a normal meal about 6-8 hours later I get terrible stomach cramps and then diarrhea.
I've had this intermittently for awhile but never was able to find out what it was. Since the CNS controls all automatic functions chances are this is all part of the same thing. Sometimes when I have a central apnea event I wake up feeling like I'm going to crap my pants. This was the first clue that it must be connected. At times it also increases my pain in all the places I usually have it about 100 fold, like a lighting bolt going down all the nerves in my body. luckily those really painful ones have subsided over the past few days.
Breathing during the day is difficult at times. Certain things seem to trigger it such as sitting upright too long or standing too long on my feet, a stuffy room or car, or too much exertion, even intense concentration for too long. It seems as though this is happening around the clock.
When I next saw the pulmonologist he told me that it was the worst results he'd ever seen and that when he checked the literature there hadn't been another case like mine since the early 1900s in which someone had Tuberculosis of the brain. Because of the rarity of it he gave some sort of presentation on my case to other doctors. He went on to say that this is very hard to treat, and acknowledged that CPAP wasn't a viable option since it made me worse. In a nutshell it was clear that my body needed oxygen, so that seemed the obvious solution, even if not a full cure so he put in an order for that but his nurse needs to get Medicare to approve it and that's not easy with their guidelines. They have to find a medical equipment company that accepts my insurance and then Medicare requires them to have me monitor my o2 saturation at home at night. The reason for this is because Medicare has some sort of bias against accepting data from a sleep lab. The standard is saturation must drop to
88% or lower for 5 minutes during sleep . In the sleep lab mine dropped to 81%.
All I can say is this thing better not betray me when we need for it to show itself most! Otherwise I could be sacrificing brain cells and my condition could end up even worse if I don't get oxygen. Having it at nighttime only is still leaving me vulnerable during the day, but it's a start, and once that's established then maybe they'll approve it during the day too. As long as this has probably gone untreated I can't afford to fall through the cracks of the medical system now.
STAY TUNED FOR PART 2
